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Why I regret my mastectomy

The absence of my breast and the scar would be easier to bear if I believed the surgery saved my life. But I don’t believe it did.

Therese Taylor's breast was removed when she was diagnosed with a condition known as ductal carcinoma in situ. She never had cancer. (Bernard Weil / Toronto Star)

By Therese TaylorSpecial to the Star

Thu., July 3, 2014

Don’t look down.

It’s what I say in my head over and over again as I stand there. Don’t look down. I’m not on a mountain top, in the nosebleed section of the Rogers Centre or ready to jump from a highrise balcony. Though my heart is overexposed.

Don’t look down. Perhaps some will say I’m still in a state of denial, having not yet faced all the other stages of loss. It’s just my new way of dealing with my now and forever freakish reality.

Don’t look down. I say it when I am naked and standing in a dark shower. There’s a light above, but purposefully I do not turn it on. I brush all my long brown hair to the front of my left side as camouflage. Don’t look down.

A show on TVO inspired the strategy. The show was about the brain and how a prosthesis can trick the mind into believing the artificial body part is in fact real.

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If I don’t look, maybe I can trick my mind into believing it’s still there. I’m determined not to be unhappy or depressed, especially as an example for my three offspring.

For more than a year when showering or getting dressed and undressed each day, I tried to embrace my predicament. Tried to face the disfigured, barren truth of it. The crevices under my arm. The crinkled, searing scar across my heart. The absence of my left breast.

My friend, which keeps my secret from strangers, my $400 prosthesis, a flesh-coloured pound of fake flesh helps trick me and my family into a life of normalcy. After all, I can’t let a boob sink the remainder of my life into desolation. I can’t let a boob ruin my life.

Most days, while wearing my prosthesis, this chicanery works. I forget I’ve had surgery and received the diagnosis, DCIS: ductal carcinoma in situ.

But the drip, drip, drip of news headlines is, some days, tortuous. I began to notice them about a year after the surgery. “Are doctors over-diagnosing cancer?” inquires one. “Mammograms may lead to breast cancer ‘over-diagnosis’,” shouts another. And earlier this year “Mammograms don’t cut breast cancer deaths.”

And so it is that Dr. Charles Wright has called for “a mandatory consent form for women to sign before screening that distinguishes the most recent and overwhelming evidence from the current inappropriate enthusiasm” for mammograms.

He rightly says “Women would then be empowered to make an informed choice.” It is my hope that this mandatory consent form would detail the controversy that has been brewing for many years about a DCIS diagnosis.

Unbeknownst to me, as early as September 2009, a full two years before my surgery, specialists at the U.S. National Institutes of Health called for the removal of the word carcinoma from the DCIS diagnosis.

How I wish I had been so empowered about DCIS. If only I had thought to search “DCIS not cancer” on the Internet at the time of my diagnosis. The information was there at the time, but not revealed to me by my caregivers.

The general surgeon who informed me of my condition said, “It’s consistent with cancer.” What does that mean? Both my husband, who had come with me for the consultation, and I were too stunned to ask. Too dumbfounded. Shocked. In a daze. “Consistent with cancer” sounded like a nice way of saying, “You’ve got cancer.”

We scheduled another consultation three days later to better inform ourselves. A friend encouraged me to ask what stage I was at. “Stage zero,” the surgeon said. But it didn’t occur to us to ask what that meant either. Some mathematical scales begin at zero, it occurred to me, but it didn’t occur to us that this meant I was precancerous.

My husband unfortunately was no better at getting at the truth of the matter and still rides waves of guilt for it, though he shouldn’t. It had been his breast for the past 30 odd years, as much as it had been mine. Maybe more his than mine.

The surgeon did not tell us it was precancer, nor that there was any controversy about DCIS.

How did all this transpire? During a physical exam at age 52, the physician said he thought there was a lump in my right breast, though I couldn’t feel one. Reluctantly I agreed to my first mammogram, something I had avoided due to controversial reports in the media. There was no lump in the right breast, but there were micro-calcifications in the milk ducts of my left. That led to a biopsy and to the diagnosis of DCIS.

The surgeon’s recommendation was, well, “surgery”. That was a Wednesday. By Friday, the hospital called with a date, 10 days hence. The rush implied some urgency didn’t it? But what was the rush, really? Had I recovered from the shock, had I known to research “DCIS not cancer,” the outcome for me would have been different.

The oncologist who chaired the panel about DCIS reported in that 2009 article, Dr. Carmen Allegra said “The name carries with it such a disproportionate level of anxiety relative to the relatively indolent nature of the disease.” I’ve discovered since then, many cancer experts, like Dr. Laura Esserman and Dr. Eric Weiner agree, DCIS is not cancer.

Another doctor and professor of public health at the University of Toronto, and one of the heads of the Canadian National Breast Screening Study released earlier this year, Dr. Cornelia J. Baines, says “My opinion remains that the DCIS diagnosis may not be beneficial to women and the treatment offered can be unnecessary and harmful.”

Three weeks postsurgery, after not being able to shower for three weeks, I met with the surgeon, who looked at my wound carefully. It would be another week or more of anxiety before I met with the chemo oncologist who declared I didn’t need chemotherapy. Another two days of disquietude and the radiation oncologist confirmed I didn’t need radiation either. It was then that we heard the word precancer.

So, why didn’t I know all this about DCIS before? Why didn’t the surgeon tell me that it was precancer before the surgery? It has been all that much harder for me to swallow since I graduated from journalism school 30 years ago and, though I don’t work in the media, have always considered myself a news junkie, up on the latest news.

As caregivers, all doctors should be helping women make an informed choice. I commend the efforts of those doctors who are fighting a mountainous battle to change the status quo.

But how long is it going to take for the other doctors to remember their Hippocratic Oath: “first do no harm.” Women should not have to rely on the Internet for the most up-to-date information. But apparently, unless you get one of the good doctors, we do.

Sometimes I wake in the middle of the night. In the dark I feel my lopsidedness, feel my starkly, flat left side, the scar rigidly intact. This is a nightmare. I want to scream.

A similar venting release can be had from laughing, I read recently. But neither laughing nor screaming is acceptable in the middle of the night. The absence of my breast and the scar would be easier to bear if I believed the surgery saved my life. But I don’t believe it did.

I know my quagmire does not come close to the suffering endured by real cancer victims: the anxiety, the nausea of chemo, the loss of hair, the burn of radiation, the fear of dying. I’m lucky. Unlucky lucky.

Mostly, I just want to warn other women that they have a choice. Before screening mammography, DCIS was rarely diagnosed. Now, according to the report Breast Cancer Control in Canada, DCIS “is the most common type of non-invasive breast cancer in women.”

Each and every year, hundreds of Canadian women are burdened with this dire pronouncement on their well-being. All the while, as Dr. Wright points out “the USA National Cancer Institute has recommended that these uncertain ‘cancers’ should instead be labelled ‘IDLE’ (indolent lesions) until research can help us differentiate those that need treatment from those that do not.”

Don’t look back, I say to myself. Another aphorism I’ve come to repeat. There’s nothing I can do to retrieve my pound of flesh from that merchant of fear. I try not to be bitter, but the news headlines cultivate dark spores on my consciousness, mould on my soul.

Don’t look back, I repeat, lest I turn into a bitter pillar of self-pity. Dr. Wright’s mandatory consent form did not come soon enough for me, but I hope it will come more than soon for the many other women to follow.

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